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Wheelchairs, Buggies And The Scotson Technique

GuestGuest Member Posts: 1,968
edited September 2014 in Disability aids and equipment
Hi all,

After deciding it is time to chase my 2 year old son's referral to wheelchair services, the cogs have slowly been whirring about wheelchairs, buggies, walking etc etc. and tonight they've gone into overload.

I asked for the referral on my son's 2nd birthday, thinking he would benefit from a more supportive buggy. 6 months later, with him due to start free nursery places in September and school the following year I'm starting to think about independence and school settings.

Harry has athetoid CP and is profoundly deaf and has recently received a cochlear implant. Cognitively he is 100%. He is slowly getting there on gross and fine motor skills - particularly since we started on the Brainwave program e.g. he is now sitting independently, and when in supported seating he can pick up small objects and hold a pencil. I'm fairly certain that he will master walking - potentially with a frame - but will probably need a wheelchair for at least some of the time. However, this is some time in the distance.

I'd love to know what people think and have done about wheelchairs, particularly

1. At this age do I push for a motorized wheelchair to give him that independence? I'm particularly thinking ahead to him starting nursery in 6 months time when he is 3

2. If we get a wheelchair of either sort, do I still need to get a buggy for outside? I've heard that he won't be allowed to used a motorized wheelchair outside at this age

3. Should I be thinking about really focusing on walking and trying out more therapies - I'm thinking in particular of the scotson technique which sounds like it could be that 'magical' therapy - I'm worried that if I invest time and money in that (probably at the expense of focusing on communication and his new cochlear implant) that I NEED it to really work but neither do I want to ignore something that is potentially so helpful.

Goodness..with so many choices we all have so many difficult decisions to make. You celebrate cracking one decision only to find there's another one around the corner. Thanks for being there and giving me the benefit of your experiences.

Replies

  • mafalamafala Member Posts: 72 Listener
    I have to agree with Jenny on every count.

    My son has athetoid CP (or dystonic) and he is a full-time wheelchair user. I could have pushed for him walking, but he is very clever and we found that communication and fine motor skills were going to be his stronger abilities so concentrated on those.

    There are a lot of kids with athetoid CP who can walk with a frame and don't need a wheelchair. This is not to say that they won't need one when they get older. Many adults with CP who have been ambulant since children need a wheelchair as they age due to arthritis and fatigue. I think if there are any issues with walking, introducing a wheelchair when the child is young might be a good idea.

    My son can't walk or sit at all. He has a powered wheelchair that he's had since he was 5. He also has a manual chair. The NHS can provide a power chair and has to provide a manual back-up. My son has a chair from Whiz Kidz, but when it's time to get a new chair I might consider going back to the NHS if they can provide one with the right features. The problem with a Whiz Kidz chair is that you don't have the same access to re-assessments and repair services.

    It's good that you're thinking about all this now. It takes a long time for things to go through.
  • hilsflynnhilsflynn Member Posts: 24
    Hi all,

    After deciding it is time to chase my 2 year old son's referral to wheelchair services, the cogs have slowly been whirring about wheelchairs, buggies, walking etc etc. and tonight they've gone into overload.

    I asked for the referral on my son's 2nd birthday, thinking he would benefit from a more supportive buggy. 6 months later, with him due to start free nursery places in September and school the following year I'm starting to think about independence and school settings.

    Harry has athetoid CP and is profoundly deaf and has recently received a cochlear implant. Cognitively he is 100%. He is slowly getting there on gross and fine motor skills - particularly since we started on the Brainwave program e.g. he is now sitting independently, and when in supported seating he can pick up small objects and hold a pencil. I'm fairly certain that he will master walking - potentially with a frame - but will probably need a wheelchair for at least some of the time. However, this is some time in the distance.

    I'd love to know what people think and have done about wheelchairs, particularly

    1. At this age do I push for a motorized wheelchair to give him that independence? I'm particularly thinking ahead to him starting nursery in 6 months time when he is 3

    2. If we get a wheelchair of either sort, do I still need to get a buggy for outside? I've heard that he won't be allowed to used a motorized wheelchair outside at this age

    3. Should I be thinking about really focusing on walking and trying out more therapies - I'm thinking in particular of the scotson technique which sounds like it could be that 'magical' therapy - I'm worried that if I invest time and money in that (probably at the expense of focusing on communication and his new cochlear implant) that I NEED it to really work but neither do I want to ignore something that is potentially so helpful.

    Goodness..with so many choices we all have so many difficult decisions to make. You celebrate cracking one decision only to find there's another one around the corner. Thanks for being there and giving me the benefit of your experiences.
  • jennyhjennyh Member Posts: 4
    Hi, I can see your dilemma..... I have no first hand knowledge of Scotson technique but know that some people have found it helpful - (magical, I'm not so sure...!) but it also very expensive and time consuming.

    Personally I believe that communication is the most important thing to work on - cos if your son has speech delay, or articulation problems or even no likelihood of speech at all (like my son) then you really can make a HUGE difference to his life chances, socially, developmentally and educationally by giving him ways to express himself, and all that goes with being able to interact, communicate with others. You have not mentioned what level his speech development is at - but he does have hearing problems, so that in itself presents communication challenges. If his fine motor skills are not too bad then he can learn to sign if necessary - but there are lots of ways to help with communication.

    Walking does seem to be the pre-occupation of many therapies (not all) and if the child has no other significant issues then that is probably fine - but if hand function is very poor and/or speech is delayed, unclear or absent, then helping with them (esp with any language related stuff the younger the better cos that is when the language receptors are like a sponge) is, in my opinion, a higher priority.

    On the wheelchair front my son got an NHS power chair (awful thing!) at 3 for nursery and then a much better one from Whizz Kidz at 4! he also needs a communication aid mounted on it. As I recall we were only only allowed to use it outside in the school playground (the NHS one). Whizz Kidz postively encourage kids to get out and about!
    WE also have a manual (push) chair from NHS. A cannot self propel so we dont; mind the heavy thing that they have provided! We also have an all terrain 3 wheeler for walks, beaches, snow etc.

    He can walk a few very wobbly steps on his own but not reliably. Sometimes my son can walk a good few hundred yards if holding a hand on either side.He did quite a lot of conductive when he was younger and that definitely helped with sitting and balance stuff. He uses a walking frame (Leckey Atlas) at school in PE and drama and the playground.

    Hope this helps!
    Jenny, mum to A, aged 11, athetoid CP, no speech, AAC user (augmentative and alternative communication) doing well in local mainstream high school.
  • ripleyripley Member Posts: 5
    I don't think Scotson or any other therapies that you hear about on here 'magical'. I think they work for some parents and for some they don't (also how much on the benefits people claim as result of doing these therapies are actually just naturally progression that would have happened regardless). Scotson is very expensive and time consuming so I would focus on communication for his cochlear implant and physio.

    I you find you have time and money (you can apply for funding from some charities) give Scotson a go and make your own mind up. By the way we do Scotson with our child and although we're not convinced continue to do it on the chance that it might help. It's a difficult situation as a parent and you end up feeling guilty for not trying something - but we have to make our own decisions as especially with so much time and effort involved.


    Cerebra - are researching some of the alternative therapies out there:

    http://sites.pcmd.ac.uk/cerebra/aboutus_website.php

    Good luck! Sorry can't help with your other questions as we are not quite at that stage yet.
  • sarahprattensarahpratten Member Posts: 83
    Regarding wheelchair/buggy I can't offer specific advice except if you can get your case status changed by the OT to urgent things should happen quicker. Also you may find that if you find something suitable yourslf, then the wheelchair service may be happy for you to buy it and then they contribute to the cost providing it will last at least a certain number of years (3 I think). I have known this to happen in Kent.

    Regarding The Scotson Technique - I would highly recommend it. My son has benifitted so much from this therapy as have many others. I would not delay as the younger these therapies are started the better - obviosly you have already started therapies, but I think TST can make such a difference as it initially concentrates on strengthening the diaphragm and with better breathing and more oxygen in the system the potential for everything else to happen increases.

    If you haven't already done so I would suggest you phone Linda Scotson - director and founder of Advance (01342 311137) to discusss your son specifically.

    Best wishes,
    Sarah

  • umbroumbro Member Posts: 5
    Hello,

    We also do Scotson with our child. We have been doing it for 2 years nearly.

    I would not call it 'magical' because I don't believe in magic and don't believe there is any miracle cure for CP.

    However Scotson has brought about changes with my daughter that no other therapy has been able to. This does not make it better than other therapies, but it works in a very different way and addresses the areas that other therapies do not touch.

    It has been hard work and a big commitment, but truly worth it, for us.

    If you have the time then I would give it a go. Charities such as the Caudwell Trust are often willing to help.

    However - do not stress about not being able to try it, if you are already stretched for time. There may be another oportunity in the future.

    U x
  • janet85janet85 Member Posts: 1
    Goodness..with so many choices we all have so many difficult decisions to make. You celebrate cracking one decision only to find there's another one around the corner. Thanks for being there and giving me the benefit of your experiences

    go for power wheelchairs
  • teachkennyteachkenny Member Posts: 1
    The scotson technique has made a fantastic difference to the development of our daughter, who is now nine. It required a long-term view, and an obsessive determination from the family to improve the quality of life for her. We are continuing with the treatment as the treatment develops and as our daughter develops. Expensive? What about it's value. We put ourselves about in the local press and have been overwhelmed by the generous response of the friends and the local community. Time consuming? Please let me know if we can spend our time in a more productive way.....!
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